If you would like to register, please email 2 preferred usernames to oceanfisher@gmail.com. You will be registered and sent instructions.
To start viewing messages,
select the forum that you want to visit from the selection below.

New Injury & Stem Cell therapy

Hello Dr. Young and everyone else,

Above all, I want to so say that I am very pleased to be able to seek for information here. Thank you everyone. And now my story that brought me here.

On 9 June 2010, my father got a car accident. Now he is paralyzed. Docters have said that he has spinal cord fracture on th8 and and neurological deficit from th9. He has no feeling below his belly button and he suffers from incontinence of feces and urine.
Since the accident he is very active in physical therapy, occupational therapy and he does many different exercises to keep his legs in good shape. But still, he has a lot of pain and he would do everything to get better or at least better than the situation that he is into now.
So thats why he is considering stem cell therapy. His main goal is not necessarily to get feeling back in his legs, but at least to regain control of his bowel and bladder.

I have been working so hard and have been busy with searching for hospitals, clinics or doctors who apply stem cell therapy and who has successful experience with spinal cord injury patients. It literally feels like I'm thrown into the deep. It's really hard to see through what is reliable and what not. Al these hospitals and private clinics talks so highly about stem cell treatments.

My question to Dr. Young and the rest is, do you have any experience, good or bad with these doctors (hospitals/ clinics) that offer stem cell treatment which you might want to share with me.

I am not sure how reliable these are or how much succes they have achieved for so far. Do you have any suggestions? Are you familiar to some other hospital/ clinic/ dokter? Any advice? I really hope that someone can help me with this.

Welcome to our forums. I would urge you to spend some time reading our Cure forums about the therapies you are investigating. Not all are legitimate, and most do not produce the claims they make related to cure or return. I will also ask Dr. Young to respond.

Meanwhile, is your father in a specialty SCI rehabilitation center? Is he getting the services of skilled rehabilitation nurses in learning how to manage and control his neurogenic bowel and bladder? He should not be continuously incontinent. Bowel and bladder programs can help with this.

The answer to your question is that none of these places have convincing evidence that their treatments work. They are charging for experimental therapies and unable to carry out clinical trials that would definitely show that the therapy works or does not work. I would strongly advise that your father not do any of these therapies until more convincing evidence becomes available. It would be a waste of time and money, as well as expose your father to risks of uncertain therapies just to treat your or his emotions.

This sad state of affairs results from the dearth of rigorous clinical trials to date on the subject and many medical clinics rushing to make money and take advantage of the lack of effective therapies for spinal cord injury. None of the centers are doing the trials necessary to prove that the therapies work. Please note that I am not saying that all the doctors are lying about the efficacy or safety of their therapy. I am just saying that none of them have convincing data of the efficacy and safety of the therapy.

Unfortunately, once they start collecting money for the treatments and become dependent on the money, they have a conflict of interest. Although some doctors stop giving the therapy when they don't think that it works, other doctors often convince themselves that the therapy works, when small recovery by the patients are due to other factors such as the natural course of recovery or the increased motivation of the patients to work harder for recovery.

Of the therapies that you list, olfactory ensheathing glia have been reported by multiple groups to improve sensation. However, recovery of motor function is much more limited and not reliable. I don't think that I have seen any convincing evidence that intrathecal administration of bone marrow cells have any beneficial effect. I would strongly recommend against #3, #4, and #6 because I believe that they have made misleading claims for the efficacy and safety of their treatments. I don't know enough about #1, #2, and #5 to comment meaningfully, other than to say that none of the centers have published convincing evidence of efficacy in peer-reviewed journals.

Wise.

Originally Posted by Zohra

Hello Dr. Young and everyone else,

Above all, I want to so say that I am very pleased to be able to seek for information here. Thank you everyone. And now my story that brought me here.

On 9 June 2010, my father got a car accident. Now he is paralyzed. Docters have said that he has spinal cord fracture on th8 and and neurological deficit from th9. He has no feeling below his belly button and he suffers from incontinence of feces and urine.
Since the accident he is very active in physical therapy, occupational therapy and he does many different exercises to keep his legs in good shape. But still, he has a lot of pain and he would do everything to get better or at least better than the situation that he is into now.
So thats why he is considering stem cell therapy. His main goal is not necessarily to get feeling back in his legs, but at least to regain control of his bowel and bladder.

I have been working so hard and have been busy with searching for hospitals, clinics or doctors who apply stem cell therapy and who has successful experience with spinal cord injury patients. It literally feels like I'm thrown into the deep. It's really hard to see through what is reliable and what not. Al these hospitals and private clinics talks so highly about stem cell treatments.

My question to Dr. Young and the rest is, do you have any experience, good or bad with these doctors (hospitals/ clinics) that offer stem cell treatment which you might want to share with me.

I am not sure how reliable these are or how much succes they have achieved for so far. Do you have any suggestions? Are you familiar to some other hospital/ clinic/ dokter? Any advice? I really hope that someone can help me with this.

sci

Dear everyone,

Thank you so much for responding to my post and answering my questions. I know that stem cell therapy is still far into the future. It’s just really hard to convince my father that stem therapy won’t give him the results that he expects.
I am a student Biomedical Science and even as a student I know enought about these clinics, but in desperate situation a man is able to believe everything.

@SCI Nurse:
My father stays currently in one of the best rehabilitation centers in the Netherlands. Doctors are working very hard to get the incontinence under control. I don’t know why it takes so much time.
And I’m not sure wich ASIA category my father has. I haven’t been told about the ASIA category. The docters said that he has complete spinal cord injury, with no sensory and motor function. Thats ASIA a, if I’m not wrong.

Thank everyone, again. Life is at the moment very gray, hopefully this will change in the future (although I doubt that). If any question comes in my mind, I hope to find my answer here from you people.